Is the 'My Journey' app (and the restricted availability of printed resources) a success or failure?

NoShrinkingViolet

A few years ago BCNA promoted the fact that the 'My Journey' kit reached about 12,000 out of approx. 14,000+ newly diagnosed BC people.  Then BCNA moved away from printed resources to an app, also called 'My Journey'.

I read somewhere in the past 6-9 months that in its first year, the app was downloaded about 6,000-7,000 times.  Cancer Australia (https://breast-cancer.canceraustralia.gov.au/statistics) suggests that BC diagnoses in 2020 will exceed 19,800, indicating BCNA's 'My Journey' app may reach far fewer than 50% of newly-diagnosed people.

What is the current reach of the 'My Journey' app for newly diagnosed people and the associated time-frame?  How many newly-diagnosed people are, instead, requesting printed resources?

A forum member recently noted the absence of annual or financial reports on the BCNA website, in view of BCNA's abundant fundraising activities.  Greater transparency with the public in relation to your operations would be welcome.

Afraser

Another angle on this subject - I have great respect for the work BCNA does and its support resources but the My Journey kit, which I received by mail, didn’t do it for me. It’s an expression I don’t like much (‘journey’), I found the focus too much on treatment and I benefited a great deal by keeping my own journal on my computer, focussing on the things that mattered most to me. I doubt if I was the only one who didn’t use it. Many if not all of those who download the app however may have already scanned the contents online and consider it useful. In the end, it’s the use of the resource not just the distribution that is most helpful. Just a thought. 

NoShrinkingViolet

@Afraser I agree about the 'J' word - it's an overused cliche and should be banned!  I understand your POV on the content whereas I raised an issue regarding distribution.

BCNA switched to digital distribution a couple of years ago.  Digital would be lower cost and offers the flexibility of tailored information and updates but may not be as user-friendly as printed materials. 

'My Journey', in printed or digital format, is available only upon request.  It appears there is a much lower take-up rate of the digital version than the printed resources of the past.
 
As BC affects predominantly older women, this may reflect a generational preference for printed vs digital resources, a preference to have a hard copy on hand for easy reference, and/or the effects of vision changes as one ages which may present a challenge when viewing intensive materials on a screen. 

Additionally, access to a computer, a smartphone or the internet is not universal whereas most people have a postal address.

TonyaM

I facilitate a bc support group and we all find the online My Journey tool too difficult to use.I’ve rung BCNA several times to have a printed copy sent to me for a reference book for my group but nothing happens.Many older ladies,non English speaking ladies and financially disadvantaged ladies cannot access this online tool.A printed booklet is much easier to earmark pages that you want to return to and handy to have with you at medical venues where you have to turn your phone off.So yes,not a fan!

SoldierCrab

I have posted the link to this in the TNBC facebook group so that newbies whom have used this resource since it went digital  have an opportunity to come forward and reply. 

Sister

Interesting discussion (and yes - ditch the title as far as I'm concerned)... I guess it depends on what you're looking for.  When I was diagnosed, I hid out in my bedroom with the book and dipped into it over the course of a couple of days.  I wouldn't have done that with the online version.  The book gave me a place to start from and a focus.  I have not really looked at it since but, saying that, I have not really looked at the online version either.

Jwrenn

I  downloaded the app initially but don’t find it all that user friendly so rang to order the book which I’m looking at it again tonight as I have a Telehealth call with my oncologist tomorrow and have no idea what that entails. So just looking for some idea of what to expect. I’ve read a lot in the book.

Abbydog

Interesting discussion. Given a choice a booklet would be my choice. 
I too would prefer to earmark a book and use a highlighter pen. 
I haven't found the online version easy to access and refer to.
Although very unfortunately some younger women suffer BC, as NoShrinkingViolet said BC is predominantly older women.
Many of us were only introduced to computers later in life.

NoShrinkingViolet

@Giovanna_BCNA @Riki_BCNA @Kirsten_BCNA Can you provide insight to the take-up of digital vs print materials since the launch of the 'My Journey' app, user feedback/research on preference for digital vs print, and user-friendliness of digital vs print?  I understand results may be segmented by age, language or ethnic background, household income and other socioeconomic factors.

Giovanna_BCNA

Hello @NoShrinkingViolet thanks for your question regarding take up of digital vs print materials since the launch of the My Journey online tool @Kirsten_BCNA will respond shortly.

Zoffiel

I think there is a common misconception that  the boomer generation is not digitally literate or engaged. Hello? We invented this stuff.  I've had a look at the online version and it is clunky. And probably not something that I would embrace if I was newly diagnosed at this point.
Distribution does not equal engagement. The amount of printed pamphlets, booklets and newsletters that I've binned after only the most cursory view makes me suffer dead tree guilt. Let alone the environmental costs of the ink.
We will never reach consensus on what to call these things. Some of the old timers will remember the epic stoush over the proposal to rename 'The Beacon'. By the way, do read that; it is worth the time but I'm glad they stopped posting it to me.
The whole   'journey'  thing gives me the wet heaves, but it is the language people use. Until they get sucked into the vortex. Once folk are far enough in to get shitty about how other people describe their experience, they are either well enough to  be contrary or need something tangible to get pissed off at that doesn't take too much energy.
I would hope that the my journey kit becomes something more tailored to true minorities. Available in many languages. Which probably means digital. Mxx

Kirsten_BCNA

Thanks for your comments and feedback on the My Journey online tool. We understand that online resources are not for everybody, and that is why we have updated the hard copy My Journey Information Guide and our updated printed resource for metastatic patients (Hope & Hurdles) is currently at the printers.   We are committed to continue to make these available free of charge.

We are an organisation that wants to ensure we provide the services people need in the way they need them - so our measure of support and reach is not just through our tool or hard copy resources. 

We know that many Australians need to speak to us on the phone, watch webcasts, listen to podcasts, interact on this online tool or hear about their breast cancer in their own language.  So I hope you have seen the increase in the way we offer information and support.

The way health care is delivered in the future will change, with more telehealth and other online services. BCNA has to keep up with the times and moving to digital is the way of the world. We have been at the forefront of the move to digital and we will continue to invest in this area.  We are in a transition there is no question about that and the tool is not perfect and everyday we are adding to it in an effort to respond to our networks feedback.  

As you point out their are many advantages of the online tool, particularly keeping the information up to date.

Through the tool we have been able to provide people with up-to-date information on coronavirus, its potential impact on people being treated for breast cancer, and how to look after yourself when you are immuno-compromised. We have had more than 10,000 people coming to us for their trusted and most up to date information. We are very proud that we are able to update it every day if required to reflect the changes around Australia.

We knew when we developed the online tool that it would take a while to build the reach up to more than 80% of people newly diagnosed. We are working closely with health professionals, especially breast care nurses, to encourage them to sign women up to the tool.  The current split of online to hard copy resources is 60% choosing online and 40% choosing hard copy - so we certainly feel proud.

The big benefit of the online tool over the hard copy guide is that we can provide information tailored to a woman or man's particular type of breast cancer and the stage of their experience  – newly diagnosed, about to begin a particular type of treatment, in follow-up care etc. It also means that we can support women and men diagnosed on the day of diagnosis - ensuring they can make the very best decisions for them and their personal situation.

For those of you have who have found the tool not very user friendly - we are SUPER keen to speak with you - the tool is an enormous investment and I know the team have responded to feedback. For example we were receiving feedback that the network wanted a search function so we have now invested in that.  We also have many many plans to make the tool more interactive and helpful.  

BCNA is an organisation led by those who have experienced breast cancer and while the online network is here for you to connect and ask each other for advice - I would really welcome people to connect directly with me and the team on any of our services to help make improvements all the time.

With regards to the term ‘journey’, it is one we have struggled with too.  We know it doesn’t resonate with everyone and its  use has significantly changed since the My Journey Kit was first launched in 2005.  However we haven’t been able to come up with something that most people can relate too - but I am totally up for hearing new suggestions. We have the same discussions around survivors! 

@TonyaM I have asked the team to follow up with you on your requests - I am sorry you have not been able to receive the hard copy.

Thanks again for your feedback. It is only through feedback like yours that we can continue to improve our products and services so please call us directly to provide it to us - we are totally up for it.

SoldierCrab

I typically call it the roller coaster ride from Hell.... and a lot of TNBC ladies identify with that on our Facebook page. If you are ok with me sharing your response @Kirsten_BCNA. I will add it to the post about this I put into the group. 

Our world is changing at a vast speed these days what is new today if outdated tomorrow, online does allow for those quick changes and updates to happen faster and with less expense.

BCNA do a great job and are open to improving and adjusting their sails as we continue to reach out to those diagnosed with BC. 

gumnut

Dear @Kirsten_BCNA and everyone in this thread
I am very happy to use most online applications/tools across various websites but I also found the online My Journey tool a little clunky.
Your (BCNA) other online resources, facts sheets and webcasts - of which I have read and viewed almost all of what was available and relevant to me - are also great, and of course your online network is invaluable. Also the BCNA printed version of Hopes and Hurdles is excellent and very informative - thank you!

Leia

I find the online My Journey a little difficult to navigate- takes me a while to find what I’m after. 

I didn’t know there was a hard copy?  I’ve found the cancer council booklets very useful- they were given to me while I was in hospital and largely covered what I’ve wanted to know. This online chat community has been very valuable for me.